Chronic Pouchitis 12+ stools/day after over a year

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

What is your history as far as meds? Have you done the antibiotic route?

I'd say consult your surgeon/GI about adding fiber supplements like mtemucil/pysillium husk to your diet. It bulks up stool and helps clear the pouch not making going too often. Also talk about adding probiotics like VSL3#. Yoghurt is a natural probiotic but then its dairy so take it if you're not lactose intolerant. Probiotics and antibiotics are not recommended simultaneously many times. Also adjusting to fiber can take a bit of time but many people found it great once your body adjusts to it. Also try doing some pelvic exercises it'll help strenghthen your muscles to hold back for longer period. Good Luck bro 👍

Scott F posted:

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

I actually verified that the Humira is indeed working with a blood test not covered by insurance. I'm reluctant to remove anymore carbohydrates from my diet as my body weight rapidly decreases if I don't consume enough. I also tried VSL #3, Metamucil, and psyllium husk ask well but had no success with any of them either. 

kta posted:

What is your history as far as meds? Have you done the antibiotic route?

I have gone through the antibiotic route just over a year ago trying Flagyl which made me violently nauseous so my doctor switched me to Cipro, which had no results the doctors were aiming for and that's how I ended up being put on Humira.   

I also forgot to mention I tried medical marijuana for a year and CBD but had no success with them either so I discontinued usage earlier this month. 

Have you been scoped to see if the Humira is even working? Maybe it’s time to switch to Entyvio which has excellent results with jpouch. I’m doing great 3 years out. Good luck. 

I’m over a year out from takedown and I usually go 10x-12 a day. I feel like that’s normal for me but I’m sure it’s all relative to what you are used to. What is your goal, in terms of number of times going to the bathroom? 

Have you considered staggering out your Imodium? I take one at lunch, one at dinner and one before bed (if needed). That seems to help me. 

Do you have leakage and stuff at night? Or any other bad symptoms of pouchitis, or is your main concern the number of times per day that you’re going? 

Bubba1028 posted:

I’m over a year out from takedown and I usually go 10x-12 a day. I feel like that’s normal for me but I’m sure it’s all relative to what you are used to. What is your goal, in terms of number of times going to the bathroom? 

Have you considered staggering out your Imodium? I take one at lunch, one at dinner and one before bed (if needed). That seems to help me. 

Do you have leakage and stuff at night? Or any other bad symptoms of pouchitis, or is your main concern the number of times per day that you’re going? 

My goal would is to go 10 times a day considering the number of times I go now. I will also try staggering the Imodium I haven't thought about that. Also I rarely have leakage at night anymore which is a relief. 

Mike.Sos posted:

Scott F posted:

Hi, Mike. That’s a tough situation. Do you think the Humira is doing *anything* for you?

One thing you could try is dramatically reducing all carbohydrates. Some folks with Chronic Pouchitis get a good result from that, but it takes determination and patience.

Another thing that might help is VSL #3. I take a maximal dose, and it seems to help me substantially. 

Finally, are you using any soluble fiber, like Metamucil/psyllium? That doesn’t cure pouchitis, but for some people can help a fair amount, by bulking up the stool.

I actually verified that the Humira is indeed working with a blood test not covered by insurance. I'm reluctant to remove anymore carbohydrates from my diet as my body weight rapidly decreases if I don't consume enough. I also tried VSL #3, Metamucil, and psyllium husk ask well but had no success with any of them either. 

Did you try Psyllium Husk (Raw) or the capsules? If you haven't tried the Psyllium Husks (are a soluble fibre derived from the seeds of Plantago ovata); try some, mix a teaspoonful with a juice, see how that works.

I don’t understand why you have been on Humira for over a year while having 12 plus BMs per day. Humira isn’t usually the first biological drug attempted to treat Pouchitis - Remicade is. It’s not clear why Humira was the first biologic drug attempted or why you have stayed on it without attempting Remicade, Entyvio or others that are typically used before Humira.

CTBarrister posted:

I don’t understand why you have been on Humira for over a year while having 12 plus BMs per day. Humira isn’t usually the first biological drug attempted to treat Pouchitis - Remicade is. It’s not clear why Humira was the first biologic drug attempted or why you have stayed on it without attempting Remicade, Entyvio or others that are typically used before Humira.

I actually have been on Remicade for several doses prior to my Colectomy.